Exploration

This is the stage of recovery where things are both going great and deeply difficult. (Because alliteration.) And the two are inextricably intertwined, so that even the difficulty becomes a sign of the progress.

Although we don’t have exact start and end dates yet, since that depends on when they can get Rebecca’s brain mapped in excruciating detail, we have a treatment plan that feels pretty solid. That in itself is a relief, as was learning that CHOP is in-network for my health insurance plan. That’s huge, considering what kind of treatments and care were required to save Rebecca’s life. Had all this been out of network, well, let’s just say that at a minimum I would have had to restart my retirement planning from scratch.

Rebecca has improved greatly over the past two days, and as of today was taking unassisted steps, holding a hand for balance, walking slowly from bed to hallway and back. Her fine motor skills have pretty much come back up to par: her handwriting looks not a bit different than it did two weeks ago. What she needs now is strength, a bit more gross motor skill recovery, and to re-establish her balance. And that last might be a function of strength. It’s easy to lose your balance when your legs are trembling from the effort of holding up your weight.

As her strength returns, though, she has enough spare energy to start processing what’s happened to her and how her life has changed from what she remembers. All sorts of fears and resentments bubble up, as they should, and can trigger epic temper tantrums that require a great deal of patience to weather, diagnose, and treat. We’re trying as hard as we can not to medicate her into quiescence, because that’s not her and it’s not our way. We want her fired up and ready to fight, her old fierce self. At the same time, we don’t want her to unnecessarily suffer real, physical pain.

It’s a tough line to walk as a parent, because we are determined not to baby her, but at the same time we have to constantly make snap judgements as to whether or not she’s really at her temporary limits, or if she’s using her situation as an excuse to be a defiant five-year-old. Then we second-guess our snap judgements. Sometimes we make the wrong calls, and learning to accept that is part of our adjustment process. We keep moving forward just as she does, slowly relearning how to do what had become second nature, stumbling, regaining our feet, and taking another step, and another, and another.

In between the storms and second-guessing, Rebecca is her old impish self, constantly smiling like she has the world’s greatest secret on her lips, laughing quietly at the funny movies she watches, making silly faces at the nurses, and generally charming the hell out of anyone she meets. She is herself, something we had feared (with good reason) might not be the case. That alone is reason to celebrate.

Bob Monsour wrote in to say...

LukeW wrote in to say...

Thank you for these updates. I suspect they are as much or more to keep a record for your family or to order your thoughts as they are to inform us, and you are generous to share them with us. One of the first things I do each day is check Twitter to see if there is any news of Rebecca. I suspect there are many others who do the same.

Isn’t it extraordinary that she’s up after such radical surgery?

– – –

On another note:

And, yes, “in-network” is the difference between things like keeping your house and losing it—and contributing to society by paying property taxes, having a retirement or not, being a purchaser who keeps companies in business, working or not and paying taxes on your income to help keep the country running, having physical therapy after surgery or an injury, suffering and not suffering, getting help and not getting help.

And it could be any reader or reader’s family member, any moment, regardless of apparently good health, great diet, following all the rules, having a great attitude, meditating, living a golden life, having scads of Twitter followers, etc. The thing can strike at any time. The thing that turns you upside down. This is why we must make allowances for each other, help each other, be generous to a fault, listen—usually without speaking, help each other as a family, community, nation to be prepared and to fix what’s broken in our system, in an open-hearted way. One day any of us can wake up and be in Eric or Kat’s position or Rebecca’s position. When it happens, I hope that we are each surrounded by love from every sort of source.

Dearest Kat, Eric, Carolyn, Becca and Josh,
This is great news!!!! When will you be home? We have a little something for the kids. Harry is saying inwardly, “Turn around is fair play!!!”
For your info, Uncle Tren’s memorial service is at the Wyoming Presbyterian Church Sat. morning Sept 14th. We will love to be with you but know this is probably not in the cards. You all are constantly in our prayers.
Harry says, “Call on us angels. We are with each and everyone of you!”
EnJoy,
Aunt Anne

Hooray for the normalcy of being 5! What glorious relief it must be to see that once again, even while adjusting to the reframing of your world. Continued prayers and thankfulness for small steps forward — and for the gift of being in-network. We shall all drink to that.

Harald wrote in to say...

Thanks for taking the time and effort to post these updates, Eric. Know that you, Rebecca, and your family continue to be in our prayers… prayers of celebration, and continued prayers for healing, strength, and peace for all of you.

Erica Deutsch wrote in to say...

dj wrote in to say...

One day at a time — that’s the mantra. “Sufficient unto the day is the evil thereof.”

Perhaps someone at the hospital has already pointed out that having that policy as a guidepost is the only way to survive, because the “ups and downs” often (read nearly always) come unexpectedly, seemingly random and very rarely with an understandable explanation.

You haven’t mentioned any “intervention” yet except perhaps stabilization from the initial vomiting. The disease is an issue, the intervention is an issue and the recovery from the intervention is an issue all rolling onward at once. Truthfully, usually the best measurement is calculating the “slope” using a straight edge across multiple months at a time.

The standard deviation is nice if it’s small; but, the slope is the important one.

I have suggested to parents of patients that they devise some measureable data points wholly unique to their family and the child. Often enough to catch some of the highs and lows, routine enough to be “then and now,” significant enough to be meaningful, easy enough to become routine yet spaced enough to be useful and maintain interest.

From what little I know of your specifics, perhaps an example or two might be:
1- Routine voice-corder snippets – “tell me a story,” “what happened good today,” “what did you learn today,” “… etc.”
2- Matt Cutts talks about video recording 30 seconds a day.
3- All of her monday-night “draw me a picture” days can be saved.

Seems like you’ve got things in hand so far; and that there are a lot of individuals sending out “good vibes” in your direction.

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